How I Communicate

My sister reading to me

I am reading the back of the newspaper.

INTRODUCTION: I know many of you have never heard about a Rett female who is able to communicate. When my blogpage was set up in March 2008, I had no idea the attention it would get. I have written many posts and responded to many questions this past year. Many of my posts included thoughts about being able to communicate, but since people continue to ask questions specific to my ability to type, I will try to share some information here, so it’s easy to find. I have no intention of trying to make anyone believe me. It is hard enough to be believed if you are verbal, but to have no audible voice is very challenging. I use a keyboard to communicate my thoughts, dreams, fears and hopes with my family most of all, and now with a larger audience. I hope you are able to hear me. I will write as I am able.

IN MY BEGINNING

February 18, 2009

When I was a baby, I was so fussy. I remember little of my first year of life, but I hear that I cried a lot. No one knew of Rett Syndrome at that time, so it was a tough time for my family. While my Mom nursed me she would read to my older sister, Leah, who is three years older than me. She loved books. Since I was so fussy, I nursed a lot. My Mom says we went to the library every week, and Leah took home a pile of books so big she could hardly carry them. I heard those stories from the time I was an infant. As I grew older, I would sit up and look at the words as they were read. I couldn’t see very well, because I have limited vision, but we have many photos of me looking very closely at printing, starting around 1 year. After a few years of listening to my Mom and Dad read out loud, my sister Leah learned to read as well. Between the three of them, someone was always reading out loud. If I sat next to them, I looked closely at the book. What they did not know, was that I was learning about letters and sounds by watching and listening to them read. I learned what the letters sounded like and eventually how they formed into words. The words became sentences. I learned to read by listening and watching. My Mom did not know what was happening, she just observed me looking at books very closely. I was fascinated by black and white images, so letters and numbers were attractive to me.

During the time I started school they assumed I was unable to read so I was offered nothing in school that would help me gain more skills in writing or reading. The things they offered me were what they would offer to a small child. Life Skills, they said, were what I needed to focus on. The tests they gave me, determined I was functioning at a 14 month old level. I have written about this in other parts of my blog, but I want to point out, that girls with Rett are rarely stimulated like a typical child their age, so it may not come from the school. My Mom worked with my teachers and therapists for years, trying to determine how to best help me. She believed that I was more intelligent than they did, so it was a constant struggle.

I had no way, and I mean, no way to communicate before we discovered facilitated communication. My Mom is not a professional, so she didn’t know how to assist me in finding a communication system. That was almost 20 years ago. There was little technology for people with disabilities. It’s possible now to find many other ways to help non-verbal people, but many of the methods introduced to me are very limiting. On a daily basis we go back to facilitated communication, because it allows me to freely express myself and not get stuck with pre-recorded buttons that drive me crazy. I fiddle with them and they continually go off, which just proves to many people that I am not capable. My brain is intelligent, my body struggles.

Karly

STARTING OUT SLOW

February 19, 2009

I was nine years old when I was introduced to facilitated communication. We read a story in a magazine about a man who had a disability and lived for 36 years in an institution. His parents brought him an electric typewriter and found when they held his wrist, that he had control over his movements. He went on to write a book. I was eight years old when my Mom read that to me. I remember the story because it seemed impossible that I would ever be able to communicate. My Mom said “if we can find someone who knows about this, we will see if they can help you.” My Mom went to our school special ed people and asked them for someone who could do an assessment on me for facilitated communication. There was a woman in a school district near us, who specialized in working with students who have autism. She had learned from a woman named Rosemary Crossley who lived in Australia.

Carrie was involved with the Autism Society of our state at the time, and came to our house. My teacher, my Mom, another person, and a caregiver were also here. My Mom was excited, but was trying not to hope too much. She thought I was intelligent by the looks I gave her, and my responses to certain situations. When I was little, around the time I was five, I remember my Mom reading a lot of different books to me. She would read baby books, ABC books, and books for older kids. She was trying to read a bunch of different things. I remember when she would read the baby books that I would grab them and throw them across the room. I was trying to tell her that I wanted to read books for older kids. She heard me. It wasn’t an accident. I continued to look closely at the words as she read to me. She had no idea that I was teaching myself to read

When the day came that Carrie, the specialist in facilitated communication, came to our house, I knew how to spell many words. During her evaluation, she showed me picture cards. When I got those right, she used cards with words and pictures. When I selected the right card while she was supporting my wrist out of a group of cards, she then went on to word cards. By the end of the session, she brought out a little typewriter that had a piece of paper that came out of the side. When I pushed the buttons, the paper held my words. She had worked with many students who were using facilitated communication in their classrooms at school. The first day I ever facilitated, I spelled out my name, and then I asked a question. “Can you record?” I wanted to know if the machine could hold my words. (My sister used a tape recorder to record books on tape from the time she was six years old, so I knew about recorders.) I knew that my words were now going to be seen.

It was a day of celebration for our family and one of my teachers. It changed our lives. I did not type the way I do now. I was much slower and I didn’t use sentences. I shared a few words at a time, but it allowed me to say that I was tired, or felt sick, or needed help. My Mom remembers me typing out when I was ten, “certain teeth hurt.” When she took me to the dentist, I had two teeth that needed treating. They were causing me pain. It was confirming for my Mom, that I was capable of communicating some of my needs. It was a great time in our lives. It was a simple message if I were able to type at all. But it made me feel hope for my life for the first time. Before I had my keyboard, I was so sad and scared. I was so oppressed before communication that I wanted to die. After I got some hope, my heart changed. I felt understood.

It has been many years now and I have used facilitated communication through it all. There have been times when it takes me 30 minutes to type one sentence. Most days now, I have the freedom to type as I am able. I’ve used it for 14 years. It is my primary communication. There are times when I would not be able to do it for weeks, because of illness, or lack of coordination. It has not always been easy.

I have taken a writing class the past two years for adults with disabilities and have had opportunities to present my thoughts and music in our community. Since I have so much time, I use it to think about how I can share my experiences. When my Mom and I have time to type together, I have those thoughts ready in my head. There are days when my thinking is fuzzy and it takes a long time to type, but other days I can type fast. For those who doubt whether girls with Rett can type, I will let you know that my hands are not stuck together like other girls I have met. My hands are very busy. I wrote about it on My Rett Body, but they are separate and busy. This probably helps. For the girls who have yet to find a way to communicate, you may find a way someday. In the meantime, give them opportunities to learn about words.

I know that composing music for the past nine years has helped me keep thoughts in my head until I am able to get them out. I am not able to compose or type without support. The person facilitating me holds my right hand and helps me separate my pointer finger. I am very strong. If they are in any way moving my hand, I pull back, so they can’t make me type. I have used it very well with at least 12 women. There have been others who have used it with me too, who are not as skilled at supporting my hand, but I can still type with them. I want to tell you that we are very aware that facilitated communication doesn’t work for everyone, but it was introduced to me before the controversy started. There was a lot of negative information shared about it, but it didn’t change that it worked for me.

Love, Karly

IN MY OWN WORDS

February 20, 2009

I know there are many people who look at their young girls with Rett and think that it would not be possible for them to communicate, especially like a typical person. I know my family didn’t believe it was possible either. My Mom used to say, if only she could figure out why I was crying, or what I wanted when I was restless. When we started communicating it was very simple, but because of what I could share, it became obvious to my Mom that I was much more intelligent than my diagnosis said I was. We were so happy. My Mom and I are looking through some of our old photos and will be choosing some to put on my page this weekend. It has been a long a difficult life, but one that has been filled with much joy. To be unlocked and able to communicate changed everything.

Many of you have left messages for me saying you know your daughters are intelligent, and my story gives you hope and encouragement to keep trying to find a way to let them out. Life should not be a prison. Facilitated Communication was my key, but for most others it may be something else. We have lived with the label I was given in school of profound impairment. It is funny now that I am out of school, but it limited me in school. They don’t offer much to students with profound impairments. I loved the last teacher I had in school. She was so good to me and gave me opportunities I never had when I was younger. But I was in a classroom with students who had great challenges. As a class we did little that was educational.

I have been surrounded by intelligent people in my life. We talk a lot. I listen to books on tape and have since I was a baby through my sister. We did not have a television for the first twelve years of my life, so I was surrounded by books and listened to ideas. I am fascinated by music. I hear it in my head. I have composed for the last nine years. If I was only exposed to baby things, I would not be the person I am today. When I started communicating at nine, my Mom realized how much I needed to be exposed to more things. I still have things I fiddle with. I have written about it on My Rett Body page, but my mind is free. The struggle we have had is that facilitated communication became questioned shortly after I got introduced to it. It worked for me. So even though I couldn’t use it openly in school, we never stopped at home. It opened me up. I was diagnosed with Rett at age 12. We had no one else to compare me with, so my Mom kept trying many things.

I hope that the Rett girls in your life are given the opportunity to have you believe in them and not limit them by what their physical bodies are showing you. We are more than you can see.

Love, Karly

How I See Things

February 22, 2009

I am eager to tell you that even though I am frustrated with my bodies’ response to Rett Syndrome, I am glad to be alive. I was not always grateful. When I was younger, I was so sad. My body was so sick I was ready to go. I was weary, and my life looked so hard some days. My Mom never gave up on me. I am so grateful that she has continued using facilitated communication with me, even though there have been struggles. I am not encouraging others to use fc. I hope that there are other ways for my friends that will not have doubt attached to it. There are times when it is so sad that my intelligence is questioned, but through it all I have a voice. If girls with Rett are allowed to learn, and are given reassurance on the days they are struggling, they can have a great life too. I have a lot of goals for this year. They are MY goals, not ones that someone else gave me to accomplish. I have the freedom to write often now, and I am so grateful. I have heard from many of you, encouraging me to continue writing.

For those of you who believe that girls with Rett cannot communicate, I am sad for you. It will happen if opportunities are given. I don’t know what others can use, but for those other Rett girls still waiting to get unlocked, I hope that there are opportunities for you to express yourself. It has taken me sixteen years to get to where I am today. Don’t give up.

Suzy McNamara said,

Karly, I am so glad to have found you. Every time I read your blog, I learn more and more and am encouraged by ways to communicate with Brooklyn, my granddaughter. We are very fortunate that her preschool teacher and aides realize her intelligence, and talk to her accordingly. She loves school, and is learning more and more! Thank you so much.

Sarah Adams said,

Facilitated Communication was the key for us, too. Like you, we didn’t listen to all the negative things said about it – we just used it because it worked. It changed everything.

For years I have wanted the message to be spread that Rett girls may be far far more intelligent than people have thought and now, with your blog, you are broadcasting that message loud and clear. Keep it up! And thank you for your honesty and open hearted sharing.

Hi Karly,
I am so happy that your Mom and family were strong and supported you so much with the facilitated communication. To not be able to communicate your needs and feelings would be frustrating beyond belief. I am so glad that people came into your life to give you this opportunity.

I am training to be an educational assistant and wondered if you could give me some words of wisdom on how to work with children with physical disabilities.

Sue said,

Karly,
What a awesome woman you are!! I am so glad I found this site. I found out today, my granddaughter is diagnosed with Rhetts. She will be two in July. You give me hope for her. Communication is one thing I fear most, due to her not being able to tell us what is going on with her. Thank you for caring enough about others to write your experiences. God bless you and your family.
Sue

Linda Zuckman said,

My husband and I watched you on TV tonight on Channel 9, April 7, 2010. I was a nurse for many years and have worked with a few woman who have your illness and they would be amazed (and probably very jealous actually) to see how you have discovered that you COULD communicate and that you have and that you inspire so many by what we saw tonight. We saw you communicate with your computer, saw how you have written music and we also got your album tonight (your CD) because we were so moved by you and all that you have done.

I don’t think anyone would ever know how very hard you have to work to get your words typed out, how hard you have to work to keep your body strong and functioning and how long it takes to get your ideas across to others. I see so much in my field, but none of what I have seen in my life as an RN I have ever had to deal with myself. I have very serious back problems now and I know how much pain I have to endure, but I have never had to try as hard as you do. You let us all see how much it is worth being determined, the way you are. We also see that it is possible to do just about anything, as long as a person can find a way, somehow, to communicate in a world where most of us can easily just say the words we want to or go the places we want to go by just getting up and moving… without as much hard work as it takes for you to do the same things.

Karly, I will never forget you. Thank you for sharing your story, and for the courage you show others. No one who has heard your story or who listens to your beautiful music could EVER forget you. Thank you for your courage, your bravery and for your gorgeous music that moves us so… I hope you sell MILLIONS of CD’s. Thank you for giving some of us who have heard that music the chance to share it with others. I plan to let a LOT of people hear the CD, so hope this helps to sell more. You are beyond amazing!!!

Rob Pakes said,

Karly
Im speechless. I have a daughter with Rett Syndrome and she is 8. Her name is alysha. I am the president of Rett NZ. We are coming over to the conference in May.
Daily, I question myself as to what my daughter is thinking, what she thinks of us, are we doing the right thing….
It pains me to think that we are doing the wrong thing and alysha cant express it. You have given us hope.
Keep up the inspirational work. I am absolutley amazed.

Sandrine said,

Dear Karly,
My name is Sandrine!
I have recently come across Rett Syndrome and never thought I would find a blog from a RS girl!
Your blog is just fascinating!
Would you be happy with me asking you some questions about your condition?
If so would you contact me on my email address?!
All the best for you! and keep up the blog running! It is just amazing!!
Sandrine

Martha Rodgers Boyles said,

Thank you for giving my daughter a voice. Elsah is five and has the CDKL5 atypical form of Rett. You have helped me to understand her more deeply and to know how to be working toward the goal of facilitated communication for her in the future.

Robin said,

I came across your blog yesterday and was very blessed by it! My daughter Lindsey is 15 and recently became exposed to f/c and is now typing at home, school, and in her community with over 8 different people. She still has lots of challenges, and some days typing goes well and other days not. I am so curious to read more about your reflections which will help me to learn more about Lindsey. We still have a long way to go with our f/c training, but so many in Lindsey’s life have been touched already by her as she now has a voice for the first time in her life!

Wow, woman. I have a little 4-year-old niece with Rett Syndrome, and I know she’s a very sharp little girl with a mischievous sense of humor and a desperate desire to be acknowledged and understood by her peers. I ache for her, and hope that someday she will find a more sophisticated tool to communicate her thoughts and ideas like you have, as now she makes eye contact to give a “Yes!” to questions.

Thank you for sharing your bright, bright spirit and mind, and thank you for the hope you’ve given me!